Welcome to my online diary about the struggles of dealing with rheumatoid arthritis. I write about about the highs and lows of day to day life in an honest way as possible. I hope to share my experiences with those in a similar position and help them to realise they are not alone. It is a unique postion to be in, to have a condition which most people associate with older people when you are just starting out in life. But together, as we discuss our experiences, we can feel less isolated and alone.

About Me

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Leamington Spa, Uk, United Kingdom
I am 32 years old woman with Rheumatoid Arthritis. The disease came on literally overnight five years ago when I was 27 years old. I was diagnosed with many different illnesses before it was labelled R.A. I am taking methotrexate, humira injections, steroids and painkillers. It's been the hardest 4 years of my life though things seem to have turned a corner and I have met a wonderfully supportive partner. For a long time I have tried to fight it and had many different therapies to treat it. I lost faith in the medical world after several misdiagnoses and inadequate treatment. I then chose to follow an alternative route and have tried reiki, spiritual healing, alexander technique, kinesiology and EFT as I believe there is an emotional and psychological element that plays a part in disease. All treatments have helped the RA though not cured it. I am currently on the Margaret Hills Clinic programme for treating arthritis and this has proved successful so far. I am trying to come to terms with the illness and deal with it rather than fight it. Follow my day to day trials and tribulations coping with the disease and how it affects my life.

Monday, 25 October 2010

Who chose the name Rheumatoid Arthritis?

I can't say it, I am so sick of saying those dreadful words!!!  There is nothing glamorous or even easy about saying Rheumatoid Arthritis.  Not only is the word 'rheumatoid' just so bizarre as far as language goes, it sounds like it something from an other planet!  Then there is 'arthritis' which conjures up images of old people with walking frames and blankets over their shoulders.  So just incase you thought the word rheumatoid wasn't that bad, the word arthritis certainly puts the boot in! AND it's hard to type aswell!

'I have Rheumatoid Arthritis' or 'I was diagnosed with Rheumatoid Arthritis' or I am a Rheumatoid Arthritis patient'.  I have lost count of the times I have said those phrases over the past few years and each time I have uttered those words my stomach has churned with both embarrasment and humiliation.  I don't want to be ill, I don't want people to look at me and pity me or even worse thing I am making things out to be worse than they are because they can't see a plaster or a bandage.  I have come to loathe the word so much especially when you have to explain to people that you are not as physically able as most people and therefore could they make allowances.  Also it's a constant reminder that you are ill, physically disabled, not like everyone else and frankly I could do without being reminded!!!!

I have now stopped saying Rheumatoid Arthritis and will now say something like 'oh I have bad knees' or have joint problems.  I don't want people to pity me, yes I am young, yes most people get arthritis when they are old and yes it's a shame it happened but this is my life and I have to live with this diagnosis.  I want as normal a life as possible, I want to show people that I can still do most things and still live a normal life.

Monday Morning Blues

Monday has come around again and the weekend has now gone.  Today I woke up at 11am and immediately feel guilty for staying in bed so long BUT I am so tired.  I thought the best thing to do after an emotional night of tears last night (it's that time of month) was do my sahaja yoga mediation which helps to clear my head but there is no point doing it before I have my medication either. 

I am trying to come off painkillers at the moment, they should be labelled joy killers too as I am too tired to do anything whilst taking them.
I want to come off them just as I want to come off prednisilone as I feel they are contributing to my weight gain and I am now taking a steady dose of other meds now so I don't think I need them.  But inevitably I am having small flare-ups as the steroids are being decreased even in tiny amounts.

I am very fed up today as I have nothing to do and am too tired and aching to do anything.  I spend all day alone with just me and the television and internet. My partner has been leaving me a list of things to do in order to try and sort out my finances but today there is nothing listed.  I think I will read a couple of books he got from the library about finances.

I have got some rice milk as I know dairy isn't good for the joints.  I am suprised that it's actually delicious and much nicer than I thought so have been having that with cereal but can't quite manage the tea just yet, I need a nice cuppa with normal milk in the morning.

I am at a cross roads, I have looked again at Margaret Hills website and seen all the testimonials and I do so badly want to have a go again.  The only thing is I am scared of failing I am scared of starting it and then 'falling off the wagon'

My Rheumatoid Arthritis Diary